HD is a creature of habit

Well, don't say I didn't warn you. Its been really tough to get back to writing this blog just as much as I thought it would be. As I mentioned in that post, HD is a disease that causes some of us to become creatures of habits, both old and new.

Baby David is now waking up in the middle of the night. He's generally still a content child. With me as his father, I'm shocked, I tell you, shocked!

Casablanca's Gambling Scene

All joking aside, I never thought I'd feel the way I do toward my own child. As I've written about many times I never expected to have my own biological child. After seeing what HD did to my mother I couldn't bring a child into this world that ran a risk of getting this terrible disease.  It was only during the testing process when Jane brought it out that there is technology now so that our child will not suffer from the illness that will take his father that I even considered it. Even then, I thought Jane would be the one and only caregiver.  I never expected to attach to our baby as terrible as that sounds. I just didn't see it happening. 

This next song describes how I thought Jane and David would think.

Helen Reddy-"You and Me Against the World (Lou Rawls Show)

Not that I didn't think I'd be attached to David, just not even close to this extent.

Me attached to my biological child? Concerned how seeing HD effect his father? No, not Paul Ware. That must be another man.

Joni Mitchell-"The Circle Game (Live 1967) 

Can you tell by my choices in music today that my sister's positive test result is still on my mind? She loves late 60's and early 70's music even though she's my baby sister. God, its even hard to write what you tested positive for Sis. I'm sorry you tested positive for Huntington's. I know you want me to be able to say it. I just did. 

So for you, one of your favourite artists singing a song that is about as non-HD as you can get. 

I love you.

Gordon Lightfoot live on the American tely show Midnight Special  -"Sundown (1974)"

Back to David, that's not to say I thought I'd be a lousy Cat's the Cradle type of Dad, just that never saw myself wanting to cradle him, him, feed him, and hold him on my chest much less feel lousy I can't change him.

Harry Chapin-"Cat's in The Cradle"

I saw on Twitter on Tuesday on October 23rd that Depeche Mode will be having a press conference. Most likely this is what the band referred to earlier this year. That's basically the announcement of their tour. 

I only hope they will be playing the Santa Barbara County Bowl again. Since I've given up driving for the most part, concerts out of town are a real pain in the butt. Also the last time I saw them a special thing happened that is just so County Bowl (for those that don't know, its a small, non-arena venue. They play here because Martin Gore lives in town).

Depeche Mode-"Walking in My Shoes turned into Enjoy the Silence"

At least they can laugh at themselves, which is more than I can say for Jane. This was the one and only concert of theirs she's gone to. Thankfully, I have a friend that will drive me down and another to meet us  if its out of town. I don't see him as often as I'd like lately, but he'll be coming up if they play the bowl as well so I'd rather have the intimate atmosphere.

Recently I had the chance to see Elvis Costello in concert. He played for over two and a half hours here without a break. I've always really liked his 80s music, Veronica was just the topping on the cake.

Elvis Costello - "Veronica" 

 For some random reason I've found myself listening to a lot of Queen lately and thinking of Trish Dainton and her husband Steve. They were giant Queen fans. She lost him a bit over a year ago to Huntington's Disease. She also is a poet and wrote a wonderful book on HD Curse in Verse and Much More Worse. (Yes Trish, I'm still pushing your book, its that good).

So when I came across this wonderful video of Queen interpreted in American Sign Language (the translation is here at the link) Trish was the first person I thought of.

Queen-"Bohemian Rhapsody" (Stephen Moore in ASL)

 On that note, its time to close up.

Catch Paul Ware on Facebook or Twitter. I can also be reached via email (delete no spam) but much prefer the Facebook message option. The comments section is fine too.

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Exhausted pg 2

Harry Chapin-"Taxi"

"Baby's so high that shes skying,/

yeah she's flying afraid to fall/

I'll tell you why Baby's crying/cuz' she's dying arent we all".

So here we are still at the medical facility. Sitting and waiting, and waiting to sit. Things calm down just long enough where sleep comes and then someone in the room will shift and everyone wakes up. Once we were able to bring in a xerox of Dahy's driving licence to compare the signature against his advance directive things changed drastically. Unused machines were physically removed in some cases, for larger pieces they were simply moved. I have learned more about "no pressures" and "DNI's" than I ever thought possible. 

I've learned how easy it is to have a chemically induced cardiac event and how truly painful they can be. I've learned some doctor's fear giving medications out on the slim chance the resulting cardiac condition will be aggravated, or that medications we take daily like decongestants raise the blood pressure. That last lesson I learned after he vomited twice after coughing so strongly, yet still refusing the morphine. The doctor finally called in a steroid so he could sleep. He felt the other medication options would increase his risk of a heart attack exponentially. 

I've learned that for some people it is instinctual to avoid medications and when they no longer do is the time you worry. I learned that lesson tonight when for the first time  Dahy  didn't try to move away from the morphine injection when the evening nurse told him what was in it. That was the first time I cried.

The Cars-"Drive"

Tonight I've learned that even six year children will love unconditionally when they can't be loved  back. I've learned there is such a thing as too much silence, and I need to keep my computer or telephone mp3 plugged in simply to get some sleep. Otherwise, every time Dahy misses a breathe I waken. And tonight he's been missing a lot of breathes and that's when they are strong enough to see or hear. 

Depeche Mode-"Enjoy The Silence"

All I ever wanted, all I ever needed

Is here in my arms

Words are very unnecessary

They can only do harm

Words are spoken to be broken

Feelings are intense, words are trivial

Pleasures remain, so does their pain

Words are meaningless and forgettable

Billy Idol-"Eyes Without a Face"

Dahy taught me that male bonding isn't just those wild road trips like the one we made from Santa Barbara to Dallas because we wanted to be able to say we'd been to Texas (no other reason) but it was also the laughter of trying to prove, and succeeding, at making 12 step meetings everyday by calling ahead to Central Office just like they taught us to do. Its the promises we made to each other while in the car, that we thought we'd never have to cash in on, because we really weren't that sick. Male bonding is being there and fulfilling those promises because that's what real friends do. 

On our road trips we'd listen to Billy Idol or whatever other crazy tune would come on the radio. We did it just because we could. For those trips we were two little boys on the road. We'd stopped growing at too early an age and this was our time to safely indulge that inner child. Our extent of planning these trips was picking out a destination, throwing clothes into a suitcase the night before, and then grabbing breakfast and lunch at the mini-mart. We were wild, and we were crazy. Actually we both still are.

Godly and Creme-"Cry"

This is the first time in my life that Jane hasn't been able to comfort me. She doesn't know what I'm going through because our relationship was so strange. I've been thinking of a photograph  Dahy has on his Facebook, it was taken in January of this year, actually on the road when we drove  partway on the PCH to judge the distance for a business trip. After a horrible holiday from his health he had a temporary feeding tube placed in so he could gain some weight back. After a lot of consultation his medical team agreed and he pumped it full of everything he could at the highest dose. So in this photo he's leaning over, his glasses hanging out of his T-Shirt neck and he looked healthier than he had in several years. and that infectious smile of his says there is nothing at all was wrong and we were having an inside joke. In fact, after our rental car broke, we were waiting for a new  one but in the meantime he had snuck into the break room where he discovered a NiHi soda machine. He was in heaven.The entire time we were out spending precious time at the dealership he was as happy as a child who had just discovered pirates gold.


I don't have access to download the photo but I may ask his wife for one as it brings back so many memories to me. Off to listen to music very low and then to get that sleep. I can tell by his breathing appears to an have decreased to an shallow breathes with an uneven pattern most likely I'll to be aware of this after all. 

Good Night